Ive always struggled with mental health and my BPD/ED since I was a teenager, and now in my 20s im going through so much illness. Chronic, lymes, all sorts. Anyone else w BPD have a chronic illness?? If u don’t mind sharing it?? I just feel so alone lol
I know I’m not alone when I say hospitals/ERs can be awful with lymes/chronic illness patients, but I just had the worst flare I’ve ever had and I’m honestly at a loss. For almost 3 weeks now I’ve had this constant feeling of weakness, lightheadedness, faintness, and like my blood circulation is just… off. I genuinely keep feeling like I’m going to pass out all day.
I finally went to the hospital because of how severe it’s gotten, even though they’ve never really helped me before. I guess part of me hoped this time would be different because I feel THAT bad. But once again all my labs came back “normal” so they basically just told me there was nothing they could do and sent me home.
I’ve seen both my LLMD and the ER now and I still feel terrible. Has anyone here actually been hospitalized for dysautonomia/POTS/Lyme-related symptoms even when labs were normal? What does it honestly take to be taken seriously? Because I feel like I’m barely functioning and nobody seems concerned unless you’re actively dying in front of them lol.
Has anyone with Bart/Lyme/Babesia experienced this weird full body feeling where your circulation just feels… off? Like your heart feels weak, your blood flow feels wrong somehow, and you constantly feel like you could pass out or like your heart might just stop. It’s hard to explain, almost like your whole body feels underperfused or not getting enough oxygen properly.
I already take a ton of salt and electrolytes daily and it doesn’t help, so I don’t know what else to do. The anxiety from the sensation itself is awful because it feels genuinely physical, not just panic.
Has anyone had this and found out what it was? Did it end up being dysautonomia/POTS, Bart symptoms, inflammation, myocarditis, or something else?
Has anyone had experience with Niagen IV / NR IV after Lyme treatment?
Quick backstory: I just finished about 5 months of clarithromycin and cefuroxime in March, with a few months of Mepron mixed in during that time. I’m now on Crypto-Co Max herbs. For a while I was actually doing really well, but a few weeks ago I had a flare that has been awful and honestly scary.
The main symptoms are dizziness, fatigue, lightheadedness, and this horrible weak “low circulation” feeling through my whole body. It’s hard to explain, but it feels like my body just isn’t getting enough energy or blood flow. I feel weak, off, and completely not like myself.
My LLMD recommended Niagen IV, the NR one, not NAD. I don’t know much about either NR or NAD, but I did my first NR IV two days ago. Right after, I actually felt great, but then yesterday I crashed into a full flare so bad that I almost went to the ER. I usually avoid the ER now because they never really do anything, but last night scared me.
I’m just feeling really lost. It sucks not feeling like yourself for years and then finally doing better, only to get knocked back down again.
Does anyone have experience with NR IV, NAD IV, or Niagen after Lyme/Babesia treatment? Did it cause a flare or crash for anyone else? Is there anything I should ask my LLMD about or anything that helped you recover from this kind of weakness/lightheadedness?
Also worth noting: I had mono about four years ago, so I’m not sure if EBV/reactivation could be playing into this too.